A Birthday, A Wedding and 2 Funerals
May 24, 2011 at 9:52 am | Posted in Grief, silver lining | 9 CommentsTags: child loss, gratitude, grief, life after loss
Today is my brother’s birthday. We are 2 years and 2 months apart. I have been told over the years that he was very excited when my parents brought me home for about 2 weeks – at which point he asked if they could return me. He spoke at Jake’s funeral when Evan and I could not. He has called me almost every day since Sawyer died. He has talked me through times that I know I could not have gotten through without him.
I look at myself in this picture of us when we were 2 and 4. If I could, would I warn myself about the path that my life would take? Would I tell myself to make different decisions? I know that life has not turned out the way that I had imagined it would when I was a child.
My brother was gracious enough to share his birthday with Evan and I. The place that we wanted to get married only had 1 date before one of Evan’s brothers left for the Peace Corps in Armenia (but that is a different story).
Eight years ago today we were married. Is it really possible that in 8 years we have had 4 children? We have had 2 funerals. One for our oldest son and one for our youngest.
If I could go back to talk to myself on my wedding day would I warn myself about the heart-break in my future? Would I tell myself that I would bury not 1 but 2 of our children? I honestly do not know the answer to these questions.
One of my favorite English teachers made us memorize the Robert Frost’s poem The Road Not Taken:
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I–
I took the one less traveled by,
And that has made all the difference.
I am fortunate enough that the roads I have taken (while they may have not been the easiest) I have had Evan and my brother by my side.
SUIDS, SIDS & Sawyer
May 20, 2011 at 8:59 am | Posted in CHD, Grief | 8 CommentsTags: grief, Sawyer, SIDS, SUIDS
Before January of 2010 I was blissfully unaware that the term SUIDS (Sudden Unexplained Infant Death Syndrome) even existed. I had heard of SIDS but my experience with it was limited to watching stories about fictional families in Lifetime movies or reading about real, unknown families in newspaper articles.
Until December of 2006, SIDS did not exist in my real world. Our next door neighbor called to let us know that another neighbor’s baby had died. It was determined the cause of death was SIDS. Evan and I went to talk to the parents. Their 2 toddler boys were running around in circles as we shared Jake’s story and they told us about their baby.
Our neighbor’s baby was full term. She was 3 months old. She had been to the pediatrician the day before. She had been taking a nap. She did not wake up. I did not know that Jake would die. However, I knew he was very premature and he had hydrops. I knew that he was in the NICU and there were complications. Our neighbor thought she was waking up her baby to take her to her first Christmas party.
December of 2009, Sawyer did not wake up.
It was determined that Sawyer’s cause of death was not SIDS because of the coarctation of his aorta. In order for SIDS to be determined the cause of death the baby must be 100% anatomically correct. The coarctation while it was not narrow enough to cause death, it did lead to the possibility that he had cardiac channelopathies.
I know that I am not the best at explaining these medical terms. The following is a better explanation from the CDC:
Sudden unexpected infant deaths are defined as deaths in infants less than 1 year of age that occur suddenly and unexpectedly, and whose and cause of death are not immediately obvious prior to investigation.
Each year in the United States, more than 4,500 infants die suddenly of no immediately, obvious cause. Half of these Sudden Unexpected Infant Deaths (SUID) are due to Sudden Infant Death Syndrome (SIDS), the leading cause of SUID and of all deaths among infants aged 1–12 months.
Sudden Infant Death Syndrome (SIDS)
Sudden Infant Death Syndrome (SIDS) is defined as the sudden death of an infant less than 1 year of age that cannot be explained after a thorough investigation is conducted, including a complete autopsy, examination of the death scene, and review of the clinical history.
SIDS is the leading cause of death among infants aged 1–12 months, and is the third leading cause overall of infant mortality in the United States
Hope & Heart Ache
May 16, 2011 at 11:36 pm | Posted in CHD, Grief, parents, silver lining, transient tachypnea | 5 CommentsTags: CHD, child loss, hope, Jake, life after loss, newborn, Sawyer
We still do not know the cause of Sawyer’s death. His heart just stopped. He is currently in a study at the Mayo Clinic for Long QT. His autopsy did not determine that it was SIDS. No matter what the results of the study conclude I know that Sawyer will still be dead. However, I hope that his death will help to provide the research which could prevent other children from dying.
According to the Children’s Heart Foundation, “Congenital Heart Defects (CHDs) are the most common birth defect in America, affecting approximately one in one hundred, or 40,000 newborns each year. CHDs are responsible for one-third of all birth defect-related deaths and sadly 20 percent of children who make it through birth will not survive past their first birthday.”
CHD’s can be detected by Echocardiogram, Cardiac catheterization, Chest X-Ray, Electrocardiogram (ECG/EKG), Magnetic Resonance Imaging (MRI) or other diagnostic testing. Newborns do not routinely have any of these exams. Some CHDs can be detected pre-birth by a Level II ultrasound or by a fetal echocardiogram.
Sawyer had a Level II ultrasound and a fetal echocardiogram. All appeared to be perfectly normal. He was also in the NICU briefly because of transient tachypnea (extra fluid in the baby’s lungs which would normally be squeezed out when the baby goes through the birth canal – c-section babies do not have the benefit of the fluid being squeezed out. )
In the NICU Sawyer’s heart and pulse oxygen levels were monitored. Again, all appeared normal. He did not have an EKG or an Echocardiogram. If he had, would anything have been detected? We will never know.
What I do know is that I wish there was more screening for newborns. I hope that organizations like Simon’s Fund succeed in their mission “To save a child’s life . . . . and then another, by raising awareness about heart conditions that lead to sudden cardiac arrest and death.”
I hope that Cora’s Story results in a pulse oximetry test on every baby. I want to help Aaron’s mom, Cora’s mom, Logan’s mom and all the other parents of CHD children to spread awareness and hope. Sawyer’s death may not have been caused by a CHD but it did make me realize how many children do die because of heart defects. Please ask your child or grandchild’s pediatrician if they provide heart screening.
“In the sharing of our losses, our hearts grow stronger.” Kirsti A. Dyer, MD, MS
Sawyer’s Story (part 16): Becoming a Stalker
May 10, 2011 at 11:08 am | Posted in Death, Grief | 3 CommentsTags: child loss, death, grief, Sawyer
We had missed the first call from the medical examiner. She had left a message. I called back. I had missed her for the day. I called again the next day. And the next. The Tuesday after Sawyer died I spoke to one of the two pathologists who had performed Sawyer’s autopsy. I spoke to Dr. R. She told me the preliminary findings and explained that it would be a few weeks before all the test results were back.
Dr. R. proceeded to tell me that Sawyer had a coarctation of his aorta. She explained that this is a narrowing of the aorta. She gave me the measurements. I asked frantically if there was some way that we could have detected this. Did we miss a symptom or a sign? Could we have prevented it? If it was a heart defect than that would mean that it was not a virus or something else that I could have let Sawyer be exposed to.
After hanging up the phone with Dr. R. Evan called our pediatrician. He told him the preliminary results. Our pediatrician explained to us that the measurements of the narrowing in Sawyer’s aorta were small but Sawyer and his heart were small. I was now wishing that I could understand more of these medical terms. More than once when Jake was in the NICU I cursed myself for going to law school instead of medical school
I tried to call Dr. R. back. She was not in her office. I left a message. She did not call back the next day so, I called again. And again. I contemplated how many times a day I could call her. I decided to keep calling but just leave messages once a day. Two painfully long weeks went by. I began to think about going to the medical examiner’s office in person.
I asked the receptionist what she thought would be good times to call. I called at the times she suggested. I called at other times. I jumped every time our phone rang hoping it would be her.
“Grief turns out to be a place none of us know until we reach it. We anticipate (we know) that someone close to us could die, but we do not look beyond the few days or weeks that immediately follow such an imagined death. We misconstrue the nature of even those few days or weeks. We might expect if the death is sudden to feel shock. We do not expect this shock to be obliterative, dislocating to both body and mind. . .” — Joan Didion (The Year of Magical Thinking)
Mixed Up Mother’s Day
May 8, 2011 at 10:20 pm | Posted in Death, Grief, mother, traditions, twins | 7 CommentsTags: child loss, Jake, mom, motherhood, Sawyer, twins
The definition of a mother is “a woman who has, conceives, gives birth to, or raises a child.”
I am so lucky that I woke up this morning to our two happy twins saying “Happy Mother’s Day!” to me. I am also so fortunate and grateful that I was able to call my mother to wish her a happy Mother’s Day. I know that there are people whose mothers, grandmothers and/or children have died. I know that this day can be challenging on many levels.
As I have written about before, I often silently tell myself to “remember the past, hope for the future but live in the present.” No matter how many times I repeat this saying I cannot help but to think about past Mother’s Days. . .
Mother’s Day 2005 – I was pregnant with Jake. We spent the day with my mom and my grandmother. My brother, sister-in-law and our 10 month old nephew had the whole family over to their house. We had not been for the nuchal screening test yet. I was blissfully ignorant and happy.
Mother’s Day 2006 – I was in a no (wo)man’s land of mothers. I was a mother with no child to care for and raise. Jake had been dead for less than a year. Evan and I went to the cemetery. We planned Jake’s unveiling and hoped for the possibility that Jake would one day have a brother or a sister.
Mother’s Day 2007 – I was pregnant with the twins. I still felt like I was living in a no (wo)man’s land of motherhood. Jake had been gone for nearly 2 years. We went to the cemetery. We had gone for an OB appointment the Friday before Mother’s Day. Our OB, who was one of the few people who met Jake, said to me at the end of the appointment that I should be really happy because I was now going to have my first official Mother’s Day. I still remember how those words cut through me like a knife.
Mother’s Day 2008 – The twins were 10 months old. According to anyone’s definition I was now a mother. Jake had been dead for almost 3 years. I was happily exhausted. We visited Jake at the cemetery and spent the day with the twins.
Mother’s Day 2009 – I was pregnant with Sawyer. The twins would be 2 at the end of July. Jake would have been 4 that August. We visited Jake at the cemetery and spent the day with the twins.
Mother’s Day 2010 – Sawyer had been dead 4 1/2 months. The twins were almost 3. Jake would have been 5. We visited Jake and Sawyer at the cemetery. I cried most of the day and tried to play with the twins.
Today we went to the cemetery. One of the twins left a toy for her brothers. She said she was leaving the toy to make Jake and Sawyer happy. As I sit here and write I think she makes me happy. So do all three of her brothers.
Small Steps
May 5, 2011 at 10:35 pm | Posted in Grief, silver lining | 4 CommentsTags: child loss, gratitude, hope, Jake, Sawyer
As I wrote about in this post I have great admiration for bereaved parents who continue the legacy of their children. We have not yet started non-profit or a run. However, we did participate in the March of Dimes walk last weekend. We have walked almost every year since Jake died. Our team had been called Jake’s Journey. This year our team’s new name is Jake’s Journey and Sawyer’s Strides.
Thank you to all those who supported our team this year and in past years. We appreciate your kindness and generosity. I do believe that the March of Dimes is making a difference and saving babies.
The walk we did started at the Mattie J.T. Stepanek park. At the age of three, Mattie started to write poetry to cope with the death of his older brother. Mattie and his brother suffered from a rare form of muscular dystrophy, dysautonomic mitochondrial myopathy. Mattie died a month before his 14th birthday. His sister and two brothers also died from the disease during early childhood. His mother has the adult form, diagnosed only after all four of her children were born.
Mattie’s mother, Jeni, spoke before the walk. I was able to meet her afterwards. Her strength and courage is remarkable. She continues to spread Mattie’s message of peace and hope. I am going to do my best to share and honor Jake’s and Sawyer’s lives.
Facing the Future
Every journey begins
With but a small step
And every day is a chance
For a new small step
In the right direction
Just follow your Heartsong
by Mattie J.T. Stepanek
The Unveiling
April 26, 2011 at 6:40 am | Posted in Death, Grief, traditions | 5 CommentsTags: grief, Jake, Jewish customs, Sawyer
Since ancient times, it has been the Jewish custom to mark the grave with a stone. After Rachel died, “Jacob erected a monument on Rachel’s grave” (Genesis 35:20). The marker/monument serves to identify the grave so relatives will find it when they visit, honor the memory of the deceased, and identify a place of burial.
It is also the Jewish custom not to place a headstone at the time of burial. Instead an unveiling is the formal dedication of the headstone. The unveiling usually takes place 12 months after the funeral as a way to mark the end of the formal mourning period. However, the unveiling may take place any time after the first 30 days after the funeral.
June, 2006. We had an unveiling for Jake 10 months after the funeral. We made this decision in part because the Rabbi who presided at Jake’s funeral was moving back to California. Evan and I both wanted the same Rabbi to preside over Jake’s unveiling. So, Evan agonized over what to write on the headstone before ordering it. He picked out the font and the border. I was numb. My mind did not seem to have the ability to think of anything to write on Jake’s headstone. Evan did it all and then showed it to me. We finalized it and placed the order.
We knew the headstone would come in a week or 2 before the ceremony was scheduled to take place. I thought for some reason we would get a call to let us know it had arrived. There was not a call. I was still going almost every day to the cemetery. Evan went with me sometimes and other times I went alone. One day, we walked up the hill to Jake’s grave and there it was – his headstone. It was covered with a sheer cloth. The pit in my stomach which had been there for the past 9 months grew bigger. We read the headstone over and over. The dates were wrong. The font was wrong.
Evan called the cemetery’s office and explained the mistakes. They assured us that it would be corrected immediately.
Our families arrived in town for the ceremony. The day before the unveiling Evan and his mom went to the cemetery. The sheer cloth was over the headstone. They read it carefully – JACK. Evan was beyond furious. He and his mom went to the office. The original wrong headstone was still there. It at least had the right name so it was put back in for Jake’s unveiling.
I do not remember much about the ceremony. I remember it was hot. Our family and close friends were there. Our 1-year-old niece and nephew were also with us and waddling around the cemetery.
Today, 2011. It is 16 months since Sawyer died. In a few days it will be 16 months since his funeral. We have not ordered a headstone. We have no plans for an unveiling. Neither of us seem to have the ability to think of what to write on another headstone. I hope to write a post before the end of this year to tell you about Sawyer’s unveiling. . .
Why I Write
April 20, 2011 at 11:46 pm | Posted in Death, Grief, silver lining | 7 CommentsTags: child loss, gratitude, grief, Jake, life after loss, Sawyer, twins
I wrote on the About page that I began this blog to hopefully assist others on their journeys and to continue the purpose of Jake and Sawyer’s lives. Now that I have been writing for some time my purpose has become a little more clear.
Not many people met Sawyer and even fewer met Jake. I feel like in writing about our two baby boys more people are able to “meet” them. I never want them to be forgotten. I do not have to speak about them all the time. I do not feel like I am keeping a wound open by writing about them. Rather, I want to share their stories. I want the twins to know their brothers. I do not want to forget the details.
I am still not so clear on some of the other purposes I have for writing. Maybe one day I will start a non-profit. I have great admiration for bereaved parents who are very active in the March of Dimes and for these parents:
Friends of Maddie
Hailey’s Hope Foundation
Simon’s Fund
Cora’s Hopes and Dreams
Maybe one of the twins will grow up to be a real doctor. Maybe one will find a cure for the cause of Jake and/or Sawyer’s death.
Or maybe someone will read this blog and find something that will make their life some how easier. If nothing else I am going to keep writing to help myself. Sawyer and Jake are dead. I am alive and I must keep on living.
In three words I can sum up everything I’ve learned about life. It goes on. ~Robert Frost
Sawyer’s Story (part 15): The Voicemail
April 10, 2011 at 10:22 pm | Posted in Grief | 5 CommentsOn Sunday we were finally able to see Sawyer. He was now at the funeral home. A shomer was reading psalms beside his tiny casket. Evan and I walked across the room and I knew that no matter how long I held Sawyer or how loudly I spoke to him he was not going to wake up. We knelt beside his casket and tried anyway. We begged, we pleaded and we cried. He was so very still.
My arms ached to hold Sawyer. Matt, the funeral home director had told me the day before that I may not want to hold Sawyer. He told me what I already knew – bodies change after death. Evan had decided that he was not going to hold Sawyer again. He wanted to remember the feeling of holding Sawyer when he was alive. I was not sure yet that I could accept that 10:45 pm on Friday was the last time I would hold our baby boy. I did not hold him on Sunday. Evan and I agreed that I would think about holding Sawyer and if I decided I wanted to I could on Monday.
Matt had also told us that we should not remove Sawyer’s hat or any of his clothing. Sawyer’s body had in fact arrived on Saturday but they needed time to get him ready for us to see him. I wanted so badly to touch his hair, his toes, his stomach. I could not.
My mind continued to search frantically for a reason that Sawyer could have died. I thought also about what had happened to Sawyer since that time we had seen him in the ER. We had been told that he was brought to the Fulton County Medical Examiner’s office. Who examined him? What did they do to him that I could no longer look at his body or even touch his hair?
I am not sure how long we stayed with Sawyer but eventually we went home. The twins, my parents, Uncle Zach, the dogs and a voicemail were waiting for us when we arrived. The voicemail was from the medical examiner. She had called with some preliminary information from the autopsy. I hung up the phone and immediately called the number she had left in the message. Someone picked up the phone immediately. It was an operator. The doctor who had called had just left. I should try again tomorrow. . .
Telling the Twins part 2
April 4, 2011 at 1:14 am | Posted in Grief, silver lining | 8 CommentsTags: death, life after loss, twins
Evan and I have tried our best to explain to the twins that Jake, Sawyer and Mom Mom are dead. It is hard to tell what actually is going on in their 3 1/2 year-old minds. However, every once in a while they give us some insight into what they are comprehending. The other week they came home from school and announced that one of their teachers had died.
“Are you sure?” I asked.
They both answered, “Yes, she was not at school today or last day (yesterday). She died.”
I quickly tried to reassure them, “She is probably on vacation or home sick.” They both look as if a light bulb just went off in their little minds.
They both happily clarify, “Yes, that is it. She got sick and then she died.”
You will all be happy to know that their preschool teacher is alive and well. She went to a wedding and is back at school. Evan and I clearly have some more explaining about death to do. . .
In my next attempt I am going to tell them the following story:
Waterbugs and Dragonflies : Explaining Death to Young Children” by Doris Stickney
Down below the surface of a quiet pond lived a little colony of water bugs. They were a happy colony, living far away from the sun. For many months they were very busy, scurrying over the soft mud on the bottom of the pond. They did notice that every once in a while one of their colony seemed to lose interest in going about. Clinging to the stem of a pond lily it gradually moved out of sight and was seen no more.”Look!” said one of the water bugs to another. “One of our colony is climbing up the lily stalk. Where do you think she is going?” Up, up, up it slowly went….Even as they watched, the water bug disappeared from sight. Its friends waited and waited but it didn’t return…
“That’s funny!” said one water bug to another. “Wasn’t she happy here?” asked a second… “Where do you suppose she went?” wondered a third. No one had an answer. They were greatly puzzled. Finally one of the water bugs, a leader in the colony, gathered its friends together. “I have an idea”. The next one of us who climbs up the lily stalk must promise to come back and tell us where he or she went and why.”
“We promise”, they said solemnly.
One spring day, not long after, the very water bug who had suggested the plan found himself climbing up the lily stalk. Up, up, up, he went. Before he knew what was happening, he had broken through the surface of the water and fallen onto the broad, green lily pad above.
When he awoke, he looked about with surprise. He couldn’t believe what he saw. A startling change had come to his old body. His movement revealed four silver wings and a long tail. Even as he struggled, he felt an impulse to move his wings…The warmth of the sun soon dried the moisture from the new body. He moved his wings again and suddenly found himself up above the water. He had become a dragonfly!!
Swooping and dipping in great curves, he flew through the air. He felt exhilarated in the new atmosphere. By and by the new dragonfly lighted happily on a lily pad to rest. Then it was that he chanced to look below to the bottom of the pond. Why, he was right above his old friends, the water bugs! There they were scurrying around, just as he had been doing some time before.
The dragonfly remembered the promise: “The next one of us who climbs up the lily stalk will come back and tell where he or she went and why.” Without thinking, the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water…
“I can’t return!” he said in dismay. “At least, I tried. But I can’t keep my promise. Even if I could go back, not one of the water bugs would know me in my new body. I guess I’ll just have to wait until they become dragonflies too. Then they’ll understand what has happened to me, and where I went.”
And the dragonfly winged off happily into its wonderful new world of sun and air…….
Waterbug 1
Waterbug 2
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